Friday, October 2, 2009

Stuff that drives ya nuts

Mostly, I feel very, very lucky that Max is who he is. Given the terrifying stuff we heard when he was born about the risks he faced. Given the fact that he is bright, determined and very adorable. And he has good hair.

Sometimes, though, he drives me slightly insane, not something I readily admit. It's one thing to laughingly gripe about Sabrina, a typically developing four-year-old with an underdeveloped sense of obedience and an overinflated sense of entitlement to anything with a Disney princess on it. It's another thing to laughingly gripe about Max, a six-year-old with cerebral palsy and lots and lots of special needs. And so, I hardly ever go there.

But you know what? Max is, in ways, just like any other kid. I can't spend life feeling like I have to treat him differently or coddle him. Like Sabrina, some of the stuff he does is crazymaking. And so, without further ado, I hereby reveal: Lately he is making me a tiny bit nutso, and it's all because of chocolate ice-cream and a condo we visit at the beach near us.

Max loves this condo. No, make that, he's obsessed with it. And when he's obsessed with something, he brings it up approximately every three minutes. "EEAASH OUSE!" he says. The speech therapist had no clue what he was talking about this weekend, but I knew: "BEACH HOUSE!" We were going there on Saturday and Sunday. And he ate chocolate ice-cream in the beach house, and you know how loony tunes he is for chocolate ice-cream.

Which brings me to bedtime for the last few nights. I tuck Max in and turn off the lights. "EEEASH OUSE!" he says. "Yes, I know, you want to go back to the beach house," I say. "EYE HEEAM! EYE HEEAM!" Max insists. "Max wants chocolate ice-cream!" I acknowledge. "EYE HEEAM EEEASH OUSE!" he says, gleeful. "Max wants chocolate ice-cream at the beach house!" I say. "YESSSSSSSSS!" Max responds.

Now, it is miraculous to be having this chat with Max, a kid who was never supposed to talk at all. But the conversation loses some of its charm by the fifth time we go back and forth. By the TWELFTH time, I am walking backwards out the door chanting, "YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE!" and making a fast break for the living room.

Cut to morning. Repeat that scene all over again, only this time I am backing out the door to run for the train as I chant, "YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE!"

23 comments:

Geez Louise!!!! Ellen, I just love the fact that I'm not the only one around here who isn't June Cleaver, the Princess of Patience all the live-long day. Yes, some stuff DOES drive me nuts...like freakishly persitent obsessions with certain videos (that should be worn out by now, but aren't) containing obnoxious songs, played over and over and over again until I have an earworm that lasts for hours (I should be grateful they're so easily amused, really!). I am lucky/lucky/lucky, though--I have "back up" in the form of my parents, and when I hit a "nails on the chalkboard" moment, I just miraculously figure out that I really need to run to the grocery store for some dire item or three... so I stash the little angels with Mom and Dad, who usually can break the obsession, whatever it might be, with activities or gingerbread cookies, by the time I get home (Dad gets them running around the back yard--wears 'em out so they sleep like logs!).

Granted, maybe I should be grateful that I have this 7 year old boy that doctors told us would never walk and talk, and he has proved them all wrong and is completely mainstreamed with other kids. He has some left sided weakness and excessive tone from the stroke, but visually you can't see it just by looking at him. He looks like your typical kid. And he acts like a stereotypical ditzy blonde. Completely on purpose. He acts as though he can't read...such a lie. He CAN read, but doesn't like to. So he says he can't. And most people fall for it. And I keep telling those people that he CAN read, yet they still let him get away with not doing it. And I know he can read because he does it at home...every. single. night.

Luke has to have the kitchen blinds wide open (I hate the hot sun and that folks can look in), never lets a towel stay hung up on a rack (adds to the amount of laundry), and often it is a huge battle to keep the kitchen light on so we can see to eat or do homework (probably sensory related, but I can figure out how to fix it).

My daughter went through a phase that I called "brain loops" where something got into her head that she actually COULD NOT get out of there. I had to come up with other things to get her brain on a different track...songs were best to help remove the problem or rhythmic poems. I would also ignore most of the repetitive stuff so as not to deepen the loop. It was clear they were loops, however, because she was really upset at the fact that she couldn't stop.

Nothing wrong with griping every now and then. Our kids may be amazing people, but they can also be a royal pain in the butt.Daniel has had a bit of a sassy attitude lately. No, I take that back - he has gone from five to sixteen almost overnight. He's been back talking and sarcastic all week. He tends to go in and out of those phases, so I'm hoping this one is short - lived.Oh, and we're having an ongoing battle about a certain beloved fire truck shirt. Daniel got it for school this year, and now he wants to wear it every single day. It's gotten to the point that when I tell him to take it off for bed, he'll stick his arms to his sides as hard as he can so I can't remove it. He also tried to be a little sneak the other day and wear it two days in a row, putting a sweatshirt over it to hide it from me on the second day. I'm almost ready to throw the darn thing away.He may be a pain in the butt sometimes, but he's my pain in the butt and I'm lucky to have him.

Aren't you the one who said we have the right to complain about our SN kids? At any rate, D. makes me absolutely BONKERS at times with his incessant demands to watch garbage truck videos on You Tube. To the point where I lose it and tell him NO MORE GARBAGE TRUCKS. And then I feel awful. But also a little relieved.

Sabrina and Sophie are obviously twins born to different mothers, or something like that (forget the pin-straight Sophie hair vs. Sabrina's gorgeous curls).

Foster drives me nuts with how SLOW he moves when he is unmotivated, which is often. Getting that boy to dress himself can take over an hour - or all day if he's dealing with someone who won't PUSH him. Like you, I know I SHOULD be thankful. There was a time I thought he would NEVER dress himself. So, yes, wonderful that he CAN. Now, I do I make him DO it without nagging and prodding him?

Well, I was going to say the way he repeats, nay screams OUTSIDE, OUTSIDE,OUTSIDE points at the door and whines...but that hasn't been happening much lately. So now it would be the way he INSISTS on closing doors & opening doors and removing DVDs from the cabinet 10 seconds after I just cleaned it all up. Totally typical stuff. I finally get to complain about typical stuff...Woot! Woot!

And so on. Anytime he gets interested in something he has to talk about it over and over sometimes for days on end. We took some neighbor kids to school for a few weeks when their grandma was having car troubles and he still asks if they are coming with us to school and they stopped coming weeks ago.

My son, James, is a typical 6 year old and he drives me nuts with the same question. "Is it show and tell day tomorrow?" Five minutes later "When is show and tell?" Five minutes later "Is it show and tell tomorrow?" Ahhhh! The other thing that drives me nuts: I ask him to put his backpack in the closet which he does like a good boy. Literally one minute later I hand him something to put in his backpack for school the next day and he falls on the floor crying that he doesn't know where his backpack is. This happens with shoes, socks, toothbrushes and just about everything else. I'm hoping this is a phase because my inclination to say "Don't be dumb" is rising to the surface.

While I'm there I can tell you all about how Ivy's meltdown week really wears me down and how some days I would like to be just me, not what I picture to be one of those velcro monkies, with another velcro monkey stuck to me.

WriterGrrl, yes, in that Bill of Rights For Parents of Kids WIth Special Needs, I said we had the right to complain about our kids—and I used Jo's phrase, that they can be royal pains. But I still feel kind of guilty about it. Obviously, not THAT guilty. Christine, come on over here and complain anytime, we're very welcoming and forgiving. Especially Felicia. :)

For me it is the sensory meltdown - screaming over something illogical like the sound of bath water running, or the sound of a coffee machine if we risk going out for afternoon tea - or the most frustrating - screaming when I take all 3 kids to the park. Em and Audrey are having a ball and Ash is in her stroller HOWLING.

I soooo laughed while reading this post. Our son, Micah, (8 year old w/ cp) does the same thing with whatever he's into at the moment. Right now it is the "Oooo ouse" ("new house" which we have been working on for a year. Imagine how many times we've heard this! ) :D

Since we are all confessing I will drop in here to say I am such a cow that I get aggravated at a baby (!!) with special needs because she keeps banging her head into mine and I can't stand it. She doesn't smack it into her dad or her day care providers or anyone else but I don't want to be this special!!

Laura's jokes I mean love her sense of humor but it can drove me nuts when in a middle of a conversation(something we have worked so hard on) she blurts out "ook"(Joke)begins laughing and then talks nonsense(and i can tell moving her mouth letting any sound come out while laughing hystrically is a joke)